Update on PANS ds

[dut]

Just thought I'd post a "where we are now" update on ds (mainly) but dd too.

 

Ds4 has probably been PANS since about 7 months (we can track it back that far only 'cos it was dd8's first recognised episode and hindsight etc).

 

Ds recently flared following a strep infection with no physical symptoms but our PANS savvy ped swabbed 'cos of his uptick in PANS symptoms.

 

He responded well to abx by day 10 (zith).

 

This was followed a few weeks later by another uptick in PANS. Rapid and culture negative but he had some ongoing stomach pain/cramps so it coulda been elsewhere. 2 separate rounds of abx reduced symptoms for a few days but didn't knock it out.

 

Ds has had c-diff, so I am wary of too many abx but would have gone round 3 or tried other abx but xmas was upon us, stomach still was not happy so the day before xmas eve I gave ibuprofen. We have tried this somewhat haphazardly before and seen some slowing in symptoms during the 'saw-tooth getting better part' of an exacerbation.

 

I gave 2 doses a day and by halfway thru xmas eve ALL the aggression (we had LOTS, hitting spitting, throwing, wild rampages that you could only shock him out of, possibly some spitting ocd/tic thing) was gone and my tender, loving ds was back

 

I kept him on 2 doses a day until new year's eve and then stopped. For a week I'd start to see some aggression/wildness creep back in and I'd give ibuprofen again but just 1 dose and wait to see what happened. It probably averaged 2 doses every 3 days or so. As of 2 days ago, no ibuprofen and no aggression.

 

His tactile defensiveness has also gone (socks and shoes), his bedtime fear of all the globes dropping of the xmas tree has ended but the main effect has been on his level of aggression and hyperness. He still won't separate from me except to his Father, sleep still abysmal, he still is getting very itching so histamine still high I;m assuming. So he's not 100%.

 

So - was he coming out anyway and the ibuprofen just masked symptoms until it was over? Both of my PANS kids do remit almost fully between exacerbations. Or did the ibuprofen do something more permanent, allowing the inflammtion to drop enough and causing some kind of cool cascade in inflammation and letting the BBB close or something..

 

anyways I'll take it

 

Dd8 hasn't been 100% since June 2010 - bedtime rituals, has to come into bed with me halfway through night, some intrusive thoughts - low level and mainly clustered around bedtime, can get a bit stuck, some ticcing. I would say she generally hovers around 95%.

 

Dd is a compound heterozygote for the MTHFR polymorphisms A1298C and C677T. She has been on 5MTHF, B6 and B12 for maybe 6 months haphazardly but really properly for 4 months or so. She has had a number of infections since Sept but no noticeable flares in PANS symptoms. For the previous 2 years she would flare in response to most infections. She ever so slightly upticked when ds swabbed positive for strep but hardly at all. I was waiting for all ###### to break loose but it never did.

 

Is this due to the methylation support her system is getting? I'm hoping so....

 

Sorry didn't mean for this to be that long but I hadn't done an update in a while......

 

Thanks

Edited January 10, 2012 by dut

[EAMom]

So - was he coming out anyway and the ibuprofen just masked symptoms until it was over? Both of my PANS kids do remit almost fully between exacerbations. Or did the ibuprofen do something more permanent 'cos of allowing the inflammtion to drop enough and causing some kind of cool cascade in inflammation and letting the BBB close or something..

 

 

I was also wondering if it was the latter, kind of like how some of these kids can be pulled out of an exacerbation with steroids.

[dut]

Hi - yeh my dd had one exacerbation that had all the signs of getting bad quickly that was ended totally by steroids. She didn't have another exacerbation until many months later. She had another that was massivly improved to about 90% with steroids. Unfortunately, since that particular one she has never gotten back to 100% but steroids have proven very effective for us.

 

I do wonder if for us the methylation issues lead to high histamine and high histamine leads to a crappy BBB. Ds is homozygous for C677T. My father had alzheimer's which is also postulated to be an issue with MTHFR polymorphisms possibly due to glutamate but also vascular changes and BBB.

[dcmom]

GREAT news Dut! SO happy for you!

 

We have found ibuprofen to be extremely helpful! Now, if I see any "early warning" pandas signs, we culture, and then add 5 days of daily antibiotics and regular ibuprofen dosing. I believe this has helped my kids several times. When we haven't gotten the resolution we hope for, we move to steroids.

[LNN]

So happy to hear things are looking up! Even if not perfect, it sounds like you've got some tools and some overall better health to make blips much easier to handle.

 

Very excited about your DDs response to the methylfolate. I hope it continues to be a great year of improvements!!

 

Laura

[dut]

Thanks folks

 

I am very content at the moment. Not something you normally hear from a PANS parent, I'll warrant.

 

Ds wasn't in exorcist mode and it would be unfair if I made it sound like he was. More like terrible twos on acid. But tiring enough for him and everyone round him.

 

I used to feel that I couldn't live with 95% but my dd is happy, more than functional, social and just a delight. I know she will be a strong, intuitive adult that, maybe, the world couldn't handle at 100%!

 

Of course, I would love 100% and also I am not naive enough to think that this over until this fat momma sings but I am quietly optimistic for her for the first time.

 

I'm hoping that the methylation issue really is key for us and that once I can get past the fear factor with giving it to ds on a permanent basis rather than hauling back every time I see a flicker of PANS, then maybe we can make some similar headway with him too.

 

If I could get both to 95% permanently that would be great and maybe we can even get to 100% with some more tweaking of methylation and other pathways. Our great ped has borrowed my Yasko book and I'll be taking her the CDs this week that go with it. I'm thinking we may stump up for the full genetic test.

 

If we do go that route I will follow up with what we find....

 

Edited March 17, 2012 by dut

[LNN]

Funny - I've thought about making my own DH take some of the supplements the rest of us now take - years of chronically sick kids has left us both a little cranky! Seriously, I started taking some of the things the kids take (zinc/B6, milk thistle, methylfolate) and I feel way way better than I have in a long time (tho having DS in a good place also helps). The methylation stuff has been a game changer for us.

 

I saw this article today and thought of you - a genome sequencer that can sequence all of your genes in one day, for about $1000 (net cost, not retail).

 

For now, Rothberg expects research labs to be his main customers, using Proton to obtain the complete genome sequence of people with cancer or autism, for instance, and thereby elucidate a disease's underlying genetic causes as well as possible ways to treat it. The company has signed on Baylor College of Medicine, Yale School of Medicine and the Broad Institute as its first customers.

 

http://news.yahoo.com/insight-dna-reader-bring-promise-050950236.html

 

I'm sure it would be years away, but it makes the whole notion of larger scale gene testing - the kind Yasko does times 100 - seem less far fetched. I really think my kids will think all this stuff is so obvious by the time they become parents.

[eljomom]

dut---can you explain a bit more about the regimen your dd and dh are on? Is it Yasko (not really sure what that is, but have heard it mentioned)? Also, who do you get to run the MTHFR test?? Still trying to figure out where methylination plays in all this pandas stuff..

[dut]

eljomom - Hi. Currently dd is taking something called Methylguard by Thorne.

 

It's got

 

20.4 mg B6 as pyridoxyl 5 phosphate

 

1.2 mg folate as 5 methyltetrahydrofolate

 

1.2 mg methyl B12

 

1.8 mg trimethylglycine (TMG)

 

She also gets methyl B12 three other times a day 'cos when you give it orally it is only available for a few hours and I've been told you want as smooth a curve of availability as possible.

 

When we started out we did it all separately. We started the folate first at 1/4 that amount for one week and added a 1/4 each week. We then added in B6 at about 1/2 amount for a week then full amount and finally added in B12 at full amount.

 

The TMG only got added when we changed to the Methylguard on our ped's rec 'cos it contained the TMG which uses a different pathway altogether to methylate. Just another layer of support.

 

In the interests of full disclosure she also gets Vit C, Vitamin A and Vitamin D emulsions, probiotics and melatonin.

 

It was an integrative dr that ordered our MTHFR test but it can be ordered by any dr. We got it done at Quest and on the lab req. it was called MTHFR DNA Analysis, I believe.

 

We are about to get myself tested and possibly dh if I can get him to do it. Genetic counselling is recommended for all family members if one comes back homozygous like ds did but we'd have done it on the back of dd's compound heterozygote result, anyway. Depending on what you read it appears that different combinations of the known polymorphisms affect different things, causing different symptom sets.

 

I'm afraid it's still as clear as mud to me. Now that ds is back to himself again, I'm hoping that I can focus out a bit and really try to understand it a little more......